You Just Received a Dementia Diagnosis. Now What?

You haven’t been feeling yourself for a while now—having trouble focusing while balancing your checkbook or forgetting the route to the grocery store. You finally made a doctor’s appointment, and that’s when you get the news – you have dementia. 

You barely notice as the doctor schedules a follow-up, shares resources, and discusses your options. Maybe your mind is racing with questions and emotions, or perhaps it’s completely empty, unable to register this life-changing news. Whatever you may be feeling, one question you keep coming back to is, “now what?”

Bella Groves offers dementia care services, education, and training to families in San Antonio who are all facing the same questions as you.  We are also training local businesses to become “dementia friendly” so that San Antonio becomes a safe haven for anyone impacted by a dementia diagnosis. Support for dementia care shouldn’t feel like a resort when “things get bad enough.” 

From day one, we are here for you and your family – from the very first “now what?” to the questions not yet known. Take it from a care team that has supported hundreds of families through their emotions and journey with dementia.  A helpful framework to adopt now in the early days is to get prepared, get proactive, and get a team together.

Get Prepared

You will come to know that there are many, many different versions of dementia, and there is no single “action plan” in coping with and living successfully with dementia.  What is universal to all people diagnosed with dementia, however, is the value of getting organized. There are three critical areas you will want to draw your attention to early.

Financial Preparation 

Organize and understand your financial picture. For veterans, some may be able to receive an additional pension (i.e., VA Aid and Attendance) for themselves and/or a spouse. Questions to consider include:

• What is your expected income now and into the future?  
• What are your normal living expenses?  
• What insurances do you have?  
• Do you have long-term care insurance?

Important Documents

Collect important documents together in one place and let family members or a trusted potential care partner (friend) know where to get them. Gather things like your medical paperwork and history, contact information for your healthcare professionals, usernames and passwords, and copies of IDs. If you have them, you also want to include legal documents like Power of Attorney, Living Will, Advanced Directives, and other written indicators of your wishes and appointed representatives.

Dementia Resources

Start to organize a map of dementia resources. Are there local organizations that specialize in dementia support? Find support groups. Do you have a neurologist and a primary care physician? Talk to your current medical professionals (dentist, podiatrist, etc.) about your diagnosis so they can prepare to continue to serve you. Research home care, assisted living facilities, home health, therapy teams, and other medical professionals you may need. Bella Groves is a unique dementia care and training organization in San Antonio that can help you with this step. 

Get Proactive

You may be in the fog of the natural, early emotions of receiving a dementia diagnosis: shock, denial, disbelief, sadness, grief, confusion, anger, fear, and guilt. You may even feel some relief because you finally have an explanation for why you have been feeling and acting differently. The important thing, though, is to allow yourself to feel whatever you are feeling without judgment and a little grace. You can access other emotions like acceptance, peace, and even joy by putting a plan in place.

Get an Exact Diagnosis – Unfortunately, even among healthcare professionals, there are many people who think all dementia is the same. Speak with your physician about your desire to get a specific diagnosis.  Keep in mind that there is no definitive diagnosis that anyone can give you. At the moment, only an autopsy can verify what form of dementia a person had. However, skilled providers (i.e., neurologists) can offer a formal diagnosis based on their expertise. If your condition is such that a provider can estimate your specific diagnosis, it can be helpful in guiding your care plan.

Questions for Physicians – Typically, a person diagnosed with dementia will have two medical teams supporting them: the primary care physician (PCP) and specialists. PCPs can often perform an initial assessment to determine a dementia diagnosis. Most will refer their patients to specialists who are more familiar with diagnosing and treating dementia. For a list of questions you may want to ask your physicians, please download this Dementia Questions for Physicians Checklist.

Specialists can range from a neurologist to geriatricians as well as those who specialize in geriatric psychiatry or neuropsychology. It is common for a PCP and specialists to make up the medical care team for a person with dementia.

Create a Framework for Your Lifestyle – The best time to prepare for your life with dementia is now. Yes, your life will change, but having information and a plan of action can put you back in the driver’s seat.  First, speak with a dementia expert to consider proactive measures such as safety and comfort in your home (ex: do I need to modify my home?). 

Next, begin a manageable routine that will keep you physically, mentally, and socially active.  Make decisions about how nutrition and hydration will support your ongoing physical health. Most importantly, communicate your plan with your support team around you, and let them help you start and/or maintain your lifestyle plan.

Get a Team

Without support and a plan, dementia can feel very lonely for caregivers and isolating for those living with dementia. It is imperative that you form a care team around you as soon as possible. 

Unfortunately, most people defer action and communication to a future time where they consider “things have gotten bad enough.” Dementia rarely affords people that exact moment of clarity – a time in the depths of struggle where you decide, “okay, today is the day I talk with my friends and family.” 

The discussion can be difficult, but it only becomes more difficult over time. Commit to putting your team together today.  There are people and resources who can support you – some organizations like Bella Groves, whose people have dedicated their lives to making dementia manageable for all those affected by it.

Family and Friends 

Your closest family and friends will be the nucleus of your care team. Develop a plan to speak with your family about your diagnosis and that you are going to need their support in putting together a plan. More importantly, that you’ll need their support in sustaining the plan as things change for you. Social connectivity and purposefulness aren’t cures for dementia, but they truly can stave off the progression of symptoms.  Letting your close friends and even neighbors in on what’s going on will help them prepare to support you. 

Healthcare Team

Your physician, any specialists, and future healthcare support (ex: therapists, caregivers, home health, and hospice) will be important in treating symptoms, attending to your physical and mental health, and otherwise keeping your body and mind as healthy as possible. If possible, be sure to designate a person in your life to attend appointments and help coordinate and keep a health record/history – a sort of dementia liaison who can speak on your behalf as you progress with changing conditions and symptoms. As mentioned earlier, your healthcare team may include a neurologist, a geriatric psychiatrist, and/or a primary care physician.

Local Community

In some ways, people find these discussions to be the most difficult. Whereas families have an implicit stake in your well-being and a medical team has a professional commitment to you, members of the local community may be less intrinsically motivated. 

But, you may be surprised at how the people you care about will rally around you. Not that long ago, cancer was highly stigmatized, and people who had it didn’t talk about it. Today, it’s hard to imagine anyone keeping it a secret and withholding support from themselves. Similarly, with dementia, maintaining connections and being involved in the things you enjoy are important to sustaining a higher quality of life. Prioritize important relationships in your community (ex: church, social groups, your favorite restaurants even) and keep them in the loop.

Nobody wishes dementia upon themselves. Hearing the diagnosis is scary, and it especially can feel overwhelming to know what you need to do next. This article isn’t an exhaustive list or plan. It’s a starting place. 

Bella Groves has a mission to create a more joyful community for families impacted by dementia and memory loss. While we have a world-class dementia care home here in San Antonio, our vision is to help families from day one of their dementia diagnosis.  This includes perhaps the most important elements of living with dementia, and that’s knowledge, a plan, and coordinating a team. You are not alone. Please call us or visit our website to get started with putting your plan together.